Through my work with YoungMinds i am often asked to think back on my time under the care of my local CAMHS service. I used to think of it is a a big portion of my “ill” experience, it did after all span three of the most mentally ill years of my life. From the age of 14 to 17 i was seriously unwell and those years were punctuated with hospital visits, feverent and frequent self harm, plunging weight, self medication and a lot of sadness.
However it has been almost 5 years now since i left CAMHS..not so much because i was supposed to, not because i was “functioning/normal/well”, whichever one of these vague concepts you want to use, but because to be perfectly honest i was fed up and wanted nothing more than to never have to sit in one of those drab waiting rooms ever again or have another appointment where i was asked “and how does that make you feel?”. I was well and truly fed up.
Looking back i think it’s a shame that my experiences caused me so much resentment and disillusion with mental health services. On paper i had a relatively good experience, over those three years i had therapy, fairly frequent meetings with a psychiatrist, a short course of CBT and tried a range of medications. However just because in black and white it looks good it unfortunately does not mean that what you get is helpful or productive and i certainly did not emerge from CAMHS a fully functioning or happy girl. Since then i have spent the last four plus years fending for myself with very little input from mental health services (other than in crisis situations which have been very mixed experiences in themselves) and have jumped from medication to medication, sometimes winding up heavily dependent and other times swearing off pharmaceuticals completely. That and i have been lucky enough to have the love and support of a wonderful family, friends and partner who have done far, far more for my mental health than trained professionals ever have.
The reason i am blogging about this subject today however is because of a specific question i was asked recently by a member of YoungMinds staff for a questionnaire around IAPT. The question was “What has been the best experience you’ve had in terms of communication and overall relationship with a mental health professional?” and the more i thought about it the more i drew a depressing blank and found myself unable to answer that question.
I tried to think back to my experience of CAMHS and the professionals i encountered in it as a service user and although the memories grow increasingly hazy as time passes i definitely remembered the ridiculous number of people i saw during that three year period.
One of the biggest problems i found with my care is that i felt i was constantly passed from one person to another. I had a therapist for pretty much the duration but i didn’t feel i could talk to her, i didn’t feel she understood me, not just because of my mental illnesses but also because i was a young person. She tried and she was a lovely person who i hold nothing against but she frustrated me with what felt like inane questions; “and how did that make you feel?” and questions i had no idea the answer to “what do you want from treatment/life?” which seemed like huge questions for someone who couldn’t see herself living until next week. I wanted her to coax out the secrets i was hiding from everyone and to help me build up trust in sharing those but i felt my trust completely destroyed when they told my parents about my Anorexia and Self Harm (they didn’t do it behind my back, they said either i had to tell my parents or they would and i didn’t have the words or the ability to voice these, i was scared and didn’t want my coping mechanisms taken from me, it felt like a bereavement when they were and in hindsight i think they could have handled the situation much better and that they should have consulted me more).
Alongside her i saw a psychiatrist every six weeks or so, these were painful and awkward sessions involving my parents who i wanted to protect from what i saw as my madness, my badness. I would sit in the corner pulling out clumps of my hair, scratching the skin off my arm and not making eye contact with anyone. The psychiatrist changed every six months and so every six months a new one came along who i had to re-tell my story to which was usually very distressing. I quickly learnt to keep quiet and avoid building up any kind of relationship with them because i knew that sooner or later they would be gone and i would have to start again and i could never predict if the next one would be helpful or do more harm than good as some did. They were a mixed bunch, “the psychs”, some were young and inexperienced, but i liked these ones more, even though i quickly found that i often knew almost as much as they did and they also seemed a lot more genuinely concerned for me, shocked that a once shy but friendly, well achieving girl could have been reduced to a bleeding, crying, shaking creature in the corner of the room. The older ones seemed to be more detached from my life, i found them patronising and often felt like screaming at them, instead biting my lip.
One particular experience stands out; I was put on a medication that soon made me highly aggressive (for anyone that knows me they know this is totally out of character), suicidal and full of nervous energy i just could not contain (i spent many nights frantically scrubbing the kitchen or pacing through the house at 4am). I went back to my psychiatrist for an emergency appointment, i told him in no uncertain terms that if i stayed on this medication i would end up harming myself or someone else. I was desperate to be off it. His response? Would i like to try a higher dose? I could have, and probably did, cry.
There were others too, numerous social workers who popped up in sessions unannounced from time to time (to this day i’m not sure what their purpose was), psychologists, a short but lovely stint with a CBT therapist and then the numerous nurses and psych teams i saw during the brief hospital admissions (i was always discharged straight away and never kept in even though this meant slow, painful months of house arrest and my parents babysitting me, taking me into work with them and my school monitoring me so closely that i felt more and more like a freak) and GPs..a subject which could easily take up a whole post in itself!
It’s hard to remember them all, i was so ill and their part in my life and health was so fleeting that i have to look back at old journals for any real detail about them. But what i remember is that however fleeting their presence they still had what felt like so much control over me. Sitting there in their offices i was a small, almost mute thing, shrunken by depression and Anorexia, and there they were, the Psychiatrist with a capital “P”, the one with the power to take me on or off medication, to increase dosages, to write about me in files that i couldn’t see and which are still kept somewhere to this day and to change what diagnosis i was labelled with..a massive thing when your sense of self and identity is so fragile. Very little of this was thoroughly discussed with me, they had their hefty medical books and their prescription pads and i complied. I do not remember a care plan, there was certainly no care co-ordinator or advocate. I remember a lot of decisions being made about me over my head without my input. I know i was not the easiest person to deal with but i don’t feel they reached out as far as they could. I was their 9 o’clock, i didn’t feel like a person, certainly not one that knew what was best for her or could be involved in any of these decisions. I wasn’t even allowed to look after my own medication, the drugs they chose, instead i had to, at the age of 17 ask my mother for it every morning like a good girl. I felt that very little of my treatment was about growth and recovery, it was more about containment; containing me and my behaviours which certainly smacked more of punishment than nurturing.
But anyway i have rambled on for far too long now and i certainly do not want to scare anyone because this after all my own personal experience, just one frustrated girl. I think what gets me is that it could have been so good, it could have been so helpful had someone reached out to me in the right way and had the whole thing been more stable, less about meds, side effects and silence and more about honest, open communication.
I wish i had felt able to speak to them and divulge more of my worries and fears but if you patronise a young person, or talk over their heads at their parents instead of looking at them it’s very unlikely that you’re ever going to build a healthy relationship. The relationship between a CAMHS professional and a young person needs to be very much a two way thing with a good dose of respect and trust on either side if it is going to be really helpful.
So i think if i had something to say to CAMHS professionals it would be to listen. Not only to the words that come out of our mouths, which may sometimes but stumbling, confused or angry, but also listen to what we’re not saying. Notice when we bite our lip when we want to speak and make sure we are involved in our care. Being involved is empowering, especially when you feel you have no control over anything in your life. And please try and empathise.
We are only human after all.
First published 28th February 2011:
http://www.vik.org.uk/2011/02/28/my-experience-of-camhs/
The Great Balancing Act 